Development of the International Classification of Functioning, Disability and Health Core Sets for children and youth with deafblindness: protocol for a multistudy collaboration across regions of WHO.

INTRODUCTION

While the International Classification of Functioning, Disability and Health (ICF) Core Sets have been developed for deafblindness across the lifespan, there are currently no Core Sets specifically designed for children and youth with deafblindness. Children with deafblindness often experience unique challenges not captured in existing Core Sets, requiring a specialised framework to assess their functioning, activity limitations, participation restrictions and environmental factors. This project aims to develop ICF Core Sets specifically for children and youth with deafblindness, capturing their daily functioning and providing a comprehensive understanding of their needs.

METHODS AND ANALYSIS

This multimethod research project will follow the standardised ICF Core Set development methodology as outlined by the ICF Research Branch. The project will consist of several studies, beginning with a systematic literature review to synthesise existing knowledge on the functioning and needs of children and youth with deafblindness. To capture lived experiences, qualitative interviews will be conducted with parents, caregivers and adolescents with deafblindness, providing in-depth insights into their daily challenges and strengths. An international survey will be distributed to professionals in healthcare, education and policy to gather expert perspectives on key factors influencing the lives of this population. Additionally, an empirical multicentre study will be carried out to explore the challenges faced by the population in clinical settings. Together, these methods will inform the development of a tailored ICF Core Set for children and youth with deafblindness, aiming to identify and classify the most relevant factors impacting their functioning, activity limitations, participation restrictions and environmental influences.

ETHICS AND DISSEMINATION

Ethical approval will be obtained for all stages of the project, in the relevant locations, ensuring the protection of participant rights and confidentiality. The findings from this project will be disseminated through peer-reviewed scientific publications, presentations at local, national and international conferences, and stakeholder reports aimed at healthcare providers, educators and policymakers. These results will inform future practices, interventions and policies to better support children and youth with deafblindness.